Tuesday, December 17, 2013

Children with Down Syndrome - How Times Have Changed

Susannah Meadows's book review in the Dec. 17 NY Times Science Section (Raising Henry, by Rachel Adams) discusses how the attitude towards children with Down Syndrome (also known as Trisomy-21) has changed.  Ms. Adams, a professor of English and American studies at Columbia University declined the amniocentesis which would have made a pre-natal diagnosis.  In describing Henry, who is now six years old, she makes the following heartwarming comment about what is described as Henry's essence:  "I couldn't have ever known about his great sense of humor or the sound of his infectious laugh.  Or the smell of his hair.  The delight he gets from singing along with music or pouring bathwater from one cup to another."  Her son is "separate from the diagnosis," she writes.

Ms. Adams goes on to describe the "abysmal" bedside manner of her physicians - the OB-GYN resident who "sewed her up"then "sprints out of the room," the pediatric geneticist who used Henry as a "teaching prop," without a word to Ms. Adams, and her obstetrician who assured her that "I wanted to make sure I didn't miss anything so I showed your records to my colleagues, and everyone agreed there was nothing."  So many doctors remain poorly trained in "people skills."  Medical schools must begin to realize that their job is to graduate not just physician-scientists, but physician-healers - doctors adept not just in the science of medicine, but in the art of healing as well.

When I was a young pediatric resident, Down Syndrome was often termed "mongolism" because of the "Asian" appearance of these children.  My chief of pediatrics routinely advised all parents of such children to institutionalize them immediately lest they adversely affect the family dynamic.  His "advice" frequently sounded more like a requirement and was, to the best of my recollection, most often followed.

Statistically 50% of children with Down Syndrome have congenital heart deformities, often rather severe forms, unfortunately.  When I was a trainee in pediatric cardiology, our team routinely declined to offer cardiac corrective surgery to these children, feeling that such treatment was far too involved for patients with Down Syndrome and that their lack of co-operation during the post-operative recovery period would add greatly to the risk and preclude a satisfactory outcome.

Attitudes have clearly changed.  No one is routinely institutionalized.  Surgery is no longer denied, and outcomes are excellent.  It has been a lifetime of change for me, especially as a pediatric cardiologist.

But one must remember that not all children with Down Syndrome have Henry's essence.  Some are extremely difficult to manage and very delayed developmentally - but so are some children without Down Syndrome.  And, finally, one needs to remember that children with Down Syndrome will become adults with Down Syndrome - and that is another issue altogether.

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